Lumpectomy Lounge....let's talk!
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Molly, so very sorry for all the pain you're having, especially with all the care I'm sure you're giving to your son. I've had 5 joint replacements over the years and wonder if the AIs will give me problems. Even with the Neulasta pod after chemo, the pain in my hips knees and hands has been pretty severe. I hear exercise helps, but it sure is hard to do when you hurt so much. Hope you take Sandy's suggestion for PT or LE therapy! I find even with a medic alert bracelet on my wrist, I still have to remind health care people not to use my left arm for anything. Feel better.
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Thank you, Grazy and Sandy, for the suggestions. I have used Voltaren gel in the past, but didn't seem to get much relief. I have used an essential oil, Panaway, in the past, too. I usually don't go for "voodoo" treatments ,but I was desperate and you know what? That darn stuff worked! I'm all out now, but my sister uses it, so perhaps I need to tap her to send me some.
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Molly, damn! I'm so sorry that you are hurting so badly. I would recommend following Sandy's suggestion of PT or LE therapy. Couldn't hurt and might help. But do talk to your MO, too. Perhaps something can be done to help besides stopping the AI (which I know you would prefer not to do if you can get everything under control).
HUGS!
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Poodles, I'm sorry you're having knee problems... I tore mine up so much I had both replaced, one 6 months after the first, but no regrets.. and I'm walking and going up and down stairs, so find a good ortho dr.
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Thanks, IHG. Everyone I've talked to who had knee replacement was glad they did it. I need both knees replaced, but I'm not about to do them both at once! I have stairs all over my house and I need at least one decent leg to get up and down.
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Thanks for the ear and the sympathy everyone. Some days are just BAD. Other days I can live with. I did a lot of steps yesterday and the knees are slightly better today. I think I just need to keep moving as much as possible. Sandy, thank you for the suggestion. Weird thing is that it is my non cancer arm that has the problem. Peggy, yes I don't want to stop the meds. I worry about recurrence as we all do.
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Molly, I wonder if maybe the muscles (nerves? tendons?) from your R Mx might be messed up and causing your discomfort? Of course, I don't know that that could be the case - just throwing it out there for you to examine. Hope you feel better and hurt lots less.
HUGS!
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Molly, so sorry you’re not getting relief. If it’s not LE, it sounds like muscle pain or some sort of neuropathy (cervical bone spur pressing on a nerve, perhaps)? Muscle pain is a known side effect of AIs, as well as statins. (But I’m guessing you’re too young to be on a statin).
Poodles, two non-prescription topicals that really helped my knees when I was out of the European OTC and American Rx-only Voltaren gel and Flector patches (note—in Europe, they might not be called “Flector;” and the gel comes in 1% and 2% strength) and Bio-Freez didn’t work the way it does on my back are plain arnica montana gel (Boiron brand is most widely available) and Traumeel gel, which contains arnica, aloe and some other soothing stuff. Both are available at Whole Paycheck. And back at the pharmacy counter, when I tore two gluteal muscles shoveling snow (until I had an ultrasound, my doc assumed it was just hip bursitis) I was prescribed Lidoderm (lidocaine) patches. Expensive, but you can cut them (and the Flector) in half and reseal the ziploc pouch. But you can’t wear the Lidoderm longer than 12 hrs., and must wait 12 hrs. before reapplying,
In the interim between Lidoderm patches, you can try the other topical options—I alternated Lidoderm & Flector patches while on a trip to Spain back in 2015—that plus a good hiking cane helped get me through…and the cane usually moved me to the front of museum lines. I like the canes and trekking poles made by Leki—they’re sold at REI and other sporting goods stores, and are more expensive than what you can get at the drugstore; but don’t scream “disabled” or “elderly” and are infinitely length-adjustable, which comes in handy for walking up-or-downhill. They also have a tungsten carbide tip hidden beneath the rubber one—which is great on ice. The handle of the hiking cane is shaped like an ice-axe handle, which comes in handy if you slip on a muddy, dewy or icy hill—you dig the pointy end of the handle into the hill above you and use the cane to pull yourself up. The trekking poles have a compass embedded in the knob handles.
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Those trekking poles sounds awesome! They'd be invaluable to someone living in an icy-snowy location. Probably overkill for me, living here in the Deep South. I'll have to take a tour of Whole Foods' OTC med aisle this week. I took oral arnica when I had that huge hematoma in my breast. I don't know how much it helped, really.
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Did #4 rads today. Finally getting the hang of things. My RO said everything is looking good with our angles and he showed me an xray of the tumor area and the target area. I go at the end of every day. No waiting in line, drop off my car to the valet, get right in and out. Very simple.
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Dizzybee, Thanks so much for your informative post....your input is very valuable especially
right now because I am still in the "data collecting" phase right now. I sincerely apologize to
all for "radio silence" for the past few days...I have been busier than a one-armed paper
hanger at work; I am convinced the surgeons that I work for are trying to do me in!!! But
it's okay because I have to re-arrange my schedule so I can hit this BC head-on!! I had my MRI
yesterday and got the results today...it showed two small lesions that did not get picked up on
the ultrasound; one of them is in a specific area that is usually "left behind" when a patient has a
mastectomy w/ reconstruction. So with that in mind, my options may be more limited than I
thought, although I am still digesting most of this. I will be biopsied tomorrow and will know more by
late Thursday or Friday. And welcome to Stacey and Lorri...you will never find a stranger in the
Lumpectomy Lounge; it's the only place so far that I have explored on the website and all the
gals are angels from heaven....they have all truly earned their wings and you can lean on them; they have broad shoulders
and big hearts! Molly and Michelle, I am
sorry that you both are having difficulties with sickness and a lot of discomfort and pain, and Molly I
hope your son is doing better...if I read correctly, he has seizures. Hugs to all of you....Peggy, Dara,
IGMJAnn49, Dizzybee, kdtheatre, Sandy, Michelle and Molly and to anyone else I owe a debt of gratitude after
you lifted my spirits Friday evening....will let you know the result of my biopsies.
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Dara congrats on finishing Chemo! You did it!!!! So glad that part is over for you and I hope everything else goes smoother.
Grazy, great photo of you and your daughter! You both are beautiful!
Poodles and Molly sorry you each are in so much pain. Hope you get relief soon!
Michelle glad you are getting used to rads. Just remember to rest when you can. It can sneak up on you!
Congrats IHJ on no chemo!!!
Hi to everyone else!
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TaTa, thank you for the kind words. You're so right about this site. I think that's one reason many of us stay here long after our surgeries and active treatments (not counting hormonal therapies). We love the people here and want to help gals newly diagnosed, like you. That's a bummer about finding that "hidden" spot. Thank heavens they did find it, but sorry it's there. Hope it is benign! Fingers crossed. I do hope that you are still able to have a lumpectomy. Let us know what you find out. Lots of decisions for you. We're here and ask your questions!!
HUGS!
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Tootsie, I have been thinking a lot lately, about whether, if I had to do it over again, would I get a mastectomy vs. lumpectomy. And do you know what? I don't know. There are pluses and minuses on both sides of the equation. My sister in law's sister had two lumpectomys, rads, tried tamoxifen and finally got a mastectomy. She is happy now. If something more were to come up with my breasts, I would probably do a mastectomy and a rebuild.
No matter what Tootsie, your doctors will find a way to remove the areas and satisfy your requests. My BS worked with me, down to the type of incisions that she would do. We worked all of that out in advance and I felt like I had more control over my situation. By participating in the decision making, I really felt that I had a team experience as opposed to one person making all of the decisions.
I have been doing some research, prompted by my RO, regarding SSRI's and radiation, more importantly SSRI's and breast cancer. There are studies out there that say SSRI's could be a contributing factor. I hope not because I need my Zoloft, it helps keep panic and anxiety in control. Most of the persons on SSRI's are women, and I don't know what I would do without my medicine.
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What would the SSRI-bc connection be—serotonin syndrome (excess serotonin)? If that’s the case, what about substituting SNRIs or SDRIs?
If I had to do it all over again, I’d still choose lumpectomy + radiation. The LE would have happened regardless, because I would have had an SNB, whatever breast cancer surgery I’d have gotten. And I know that in the event of a local recurrence, mastectomy would still be on the table. (And if it were a distant one, I’m not so sure that having had MX in the first place would have prevented it). Not sure whether I'd want to go through reconstruction, though—TEs sound like torture, and DIEP might not be an option because of my BMI. (Fat transfer, perhaps)?
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Hi ladies, thank you again for the understanding of my pain. Today was better. The more I move the better, at least for my knees. My arm comes and goes. Tatatootsie, I am so glad you are finding comfort here. This thread is my first home on BCO and Peggy is always encouraging. For those who are deciding on surgery I watched a live talk today on Facebook by a surgeon at UCLA on mx vs lx in early breast cancer. If you go here UCLA Health and scroll down to where it says UCLA goes live you can watch the video. She was really informative.
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Sandy, the reason that I started digging around is because my Zoloft and Tamoxifen utilize the CYP2D6 gene. That is why I can't take both at the same time. And then, I remember a doctor asking how long I had been taking the SSRI, as she herself and a number of her female patients had breast cancer and took SSRI's. The gene is substantially expressed in the central nervous system, which is why they probably used it for transporting the chemical messages on reuptake. I wonder how one gene could be responsible for central nervous system and hormonal functions simultaneously. I did have a conversation with my MO's office, letting them know that I was getting nervous about estrogen modulators. I don't see the MO until Nov 30th, as I finish radiation in the beginning of Nov., allowing myself to heal and enjoy Thanksgiving. They asked me if I wanted to move up my MO apt and I said no because I am also seeing my ob/gyn with regards to my ovaries and uterus in early Nov. I want to make a comprehensive plan with choices, a,b,c,d,e, etc. and would like to have options ready to discuss with the MO on Nov 30th.
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Ah—thought you were on an AI. CYP2D6 isn’t a “gene,” it’s an enzymatic pathway used by tamoxifen to “gum up” the tumor cells’ estrogen receptors. According to some pharmacological websites (and conflicting studies!), some SSRIs, SNRIs and SDRIs compete with tamoxifen for that pathway, which they use to inhibit reuptake of serotonin, norepinephrine and dopamine—impeding tamoxifen’s effectiveness in preventing the tumor cells from accessing estrogen. Not all of these antidepressants are contraindicated with tamoxifen, but Wellbutrin (an SDRI), Prozac and Paxil (SSRIs) are. SSRIs are first-generation antidepressants, and SNRIs are third-generation. There are conflicting studies regarding Zoloft.
BUT that doesn’t mean you don’t have options. You can try ovarian suppression or artificially-induced menopause (you’re almost naturally there chronologically) and then an AI; or you can try an SNRI like Effexor or Pristiq (the jury is out on Cymbalta). A safe non-SSRI/SDRI/SNRI alternative is buspirone (BuSpar) which also has anti-anxiety effects (reducing or eliminating the need for a benzodiazepine such as Valium, Xanax or Ativan). However, a Dec. 2015 study by the AAFP failed to find any actual evidence that the theoretical (and logical) biochemical risk that some selective endorphine reuptake inhibitors (the S*RI drugs) actually did cause a real-world increase in recurrence.
You need to discuss this with both your MO and your shrink. Maybe put them together in a cage match...
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Molly, so glad today was a better day for you, and hope tomorrow will be better still.
Dara, great to be finished with chemo, that is such a milestone to get past. How long a break do you get till the start of rads? I hope it's long enough for you to feel strong and rested and ready to move on, you've done the hardest part and can look at getting this journey over with.
Poodles, if a hot bath really helps your pain, would an electric heated pad help if you wrapped it round? I have trapped nerves in the base of my neck, which I mostly deal with by stretches, but if it creeps up on me I get a lot of pain in my shoulder and down my arm. (Which is one reason it was great not to have a SNB ,since it's the same arm) My electric pad works better for it than any painkiller I've tried so far.
I had my follow up appointment with the surgeon yesterday, started Tamoxifen now so we'll see how that goes. I collected my path reports, still trying to make sense of it all, but I think it's telling me that the final excision was 9.5 centimetres, no wonder I lost a little fullness compared to last time. But the tumour size is no bigger so I guess I now have huge margins. The report talks about comedo necrosis, so it's probably just as well.
The hormone receptor came back as ER 100% but PR negative, does the PR result only matter if you're ER-?
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Poodles, the trekking poles would come in very handy when you go to the n. GA mts. I found the hiking cane to be indispensable when touring Europe and encountering hills and steep stone steps that lacked railings.
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Sandy, I am very lucky to have such wonderful doctors. I am sure that we can come up with some type of plan which will ensure my compliance and success of whatever meds I end up taking. We are a little medical mecca down here, bringing in talent from USC, Harvard and Wash U. I feel so fortunate that access to such healthcare is readily available.
I am going to try to access some of the current studies on SSRI's, TCA's and SERM's. My due diligence background is just screaming for more information!
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Dizzy, PR negative tends to be more aggressive so you may end up with a high oncotype Dx score.
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Dizzybee, my tumor was also PR-. My MO considered it to be a more aggressive cancer, so my treatment plan changed from LX with rads, to LX and chemo.
Michelle, I totally get your concerns. I have bipolar disorder and you better believe NO ONE wants to see me off my meds! I dont know which is worsr, breast cancer or bipolar? They can both kill you. It's a crap shoot.
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Sandy, Cytochrome P450 2D6 is an enzyme that in humans is encoded by the CYP2D6 gene. CYP2D6 is primarily expressed in the liver. It is also highly expressed in areas of the CNS, including the substantia nigra. The cytochrome is in superfamily of enzymes.
Before I make any decisions, I am going to have that gene tested to make sure it is reactive, because I have been on Zoloft for so long. It could be non-reactive to Tamoxifen, taking that choice off of the table. Some people genetically are not candidates for Tamoxifen - about 7%. My plan is to wait until after radiation, because of body chemistry changes.
I am trying to figure out the path of least resistance in drug choice, because I am such a chicken. I will deal with whatever I have to, but the idea of being in pain for 5 years scares the heck out of me.
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Michelle, not to preach, but i've found God gives us the grace to get through whatever challenges we get.. I have severe back spasms and had to give up sewing and baking and love both.. but most of what i do now is on computer.. I am updating a coloring book, perspective designs... and have no problems with that
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Molly, I don't get to have an oncotype test, so the plan is definitely only for rads. There is an oncotype test for DCIS, they use it to decide whether to use rads on small or low grade tumours, so it isn't relevant for me. I don't quite understand how I get to have a fairly big, multifocal tumour with comedo necrosis but no invasion. But DCIS hasn't made the last mutation which makes it invasive, so it is confined to the ducts, it isn't able to survive outside. So no need for node testing or chemo because it can't have travelled anywhere except through the ductal system. But if anything is left behind it can become invasive at any time, so it still needs zapping with rads, and Tamoxifen to try to prevent recurrence. They don't do HER2 testing for DCIS.
So it's a bit weird knowing this is high grade and aggressive on the one hand but not invasive (yet) on the other. I could have had a 5cm invasive tumour, and I know I have a higher chance of developing a new cancer because of the size/grade.
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Judy, I am hoping for mercy from God, because I am fearful. I will not give up my design work and be in pain 24/7. I have worked too hard and too long to get to this point in my life where I can enjoy my activities. Through God and my doctors, I will find a solution that will work for me. Perhaps Eastern and Western medicine, a little anti estrogen pill with a side of acupuncture. I pray to the Holy Spirit (I'm Catholic) frequently to fill me with tenacity and fortitude when facing daunting situations.
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Dizzy, sorry I forgot you were DCIS. Yes, you need to push for active surveillance due to the high grade and aggressive nature of your disease. Be your own best advocate! Michelle, don't assume you won't handle anti hormonals well. MOST do. Peggy is one who has little to no SE's. I won't give up even with the joint pain that comes and goes. I would rather be around to see my grandson grow up than worry about the SE's of these meds.
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To anyone worried about AIs, I wanted to add to Molly's post, even if you have side effects at the beginning, often they pass as time goes on so don't give up right away. I'm around the six-month mark now and pop the little white pill each morning without a thought, except for my silent "thank you". At the beginning, I occasionally had stiff hands and ankles upon waking, a resurgence of hot flashes each day and a dandy nightsweat once a week, but now - several months later - I have the rare hot flash (fewer than I was having pre-diagnosis), no more nightsweats or stiff hands and ankles, but I do have a sore knee now and then, and I am not entirely certain it's AI-related when it's only one knee. I'd say I had se's for about four months before things evened out.
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Grazy, thank you for your reassurance. It really means a lot to me.
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